Musolino et al. Journal of Eating Disorders (2016) 4:36
DOI 10.1186/s40337-016-0114-2
RESEARCH ARTICLE
Open Access
Developing shared understandings of
recovery and care: a qualitative study of
women with eating disorders who resist
therapeutic care
Connie Musolino1*, Megan Warin1, Tracey Wade2 and Peter Gilchrist3
Abstract
Background: This paper explores the differing perspectives of recovery and care of people with disordered eating.
We consider the views of those who have not sought help for their disordered eating, or who have been given a
diagnosis but have not engaged with health care services. Our aim is to demonstrate the importance of the
cultural context of care and how this might shape people’s perspectives of recovery and openness to receiving
professional care.
Method: This study utilised a mixed methods approach of ethnographic fieldwork and psychological evaluation
with 28 women from Adelaide, South Australia. Semi-structured interviews, observations, field notes and the Eating
Disorder Examination were the primary forms of data collection. Data was analysed using thematic analysis.
Results & Discussion: Participants in our study described how their disordered eating afforded them safety and
were consistent with cultural values concerning healthy eating and gendered bodies. Disordered eating was
viewed as a form of self-care, in which people protect and ‘take care’ of themselves. These subjectively experienced
understandings of care underlie eating disorder behaviours and provide an obstacle in seeking any form of
treatment that might lead to recovery.
Conclusion: A shared understanding between patients and health professionals about the function of the eating
disorder may avoid conflict and provide a pathway to treatment. These results suggest the construction of care by
patients should not be taken for granted in therapeutic guidelines. A discussion considering how disordered eating
practices are embedded in a matrix of care, health, eating and body practices may enhance the therapeutic
relationship.
Keywords: Eating disorders, Recovery, Care, Therapeutic relationship, Cultural context, Qualitative
Background
It is well recognised that recovery is a contested term in
the eating disorder literature and that ‘there is no single
definition or description of [this concept]’ ([1] p4). A
number of studies point to inconsistencies with the way
criteria for recovery is used and defined in clinical trials,
making it difficult to compare research and reach
* Correspondence: [email protected]
1
Gender Studies & Social Analysis, School of Social Sciences, Faculty of Arts,
University of Adelaide, Napier Building, Adelaide, South Australia 5005,
Australia
Full list of author information is available at the end of the article
consensus [2, 3]. Current clinical definitions of recovery
incorporate the presence of minimal eating disorder psychopathology (i.e., within one standard deviation of the
range of healthy populations), the absence of disordered
eating behaviours, and achievement of a healthy body
mass index [3].
There has been a movement towards recovery-oriented
practice and service delivery [4]. Those with lived experience of a mental illness and support organisations have
emphasised the recovery model primarily within a social
justice movement aimed at restoring the human rights
and full community inclusion of people with mental
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Musolino et al. Journal of Eating Disorders (2016) 4:36
health issues [1]. Australia’s National Framework for
Recovery-Oriented Mental Health Services reflects this
momentum, recognising the value of lived experience, the
diffuse lines of recovery, and respecting clients’ knowledge
and choice alongside that of health professionals [1].
The recovery model is a central theme in the Royal
Australian and New Zealand College of Psychiatrists
Clinical Practice Guidelines for the Treatment of Eating
Disorders [5]. It is intended to provide current evidence
based guidance on the assessment and clinical treatment
of people with eating disorders in the Australian and
New Zealand context [5]. The guidelines state ‘care for
people with eating disorders should be provided within a
framework that supports the values of recovery-oriented
care’ ([5] p983). This document for the clinical management of eating disorders has been well received and
represents the work of a collaboration of health care academics and professionals, and wide consultation with
key stakeholders and the community. In their systematic
review Hay et al., point out that ‘most people make a
sustained recovery with treatment’, including ‘people
with anorexia nervosa, where up to 40 % of adults (and
a higher percentage of adolescents) will make a good
five-year recovery, a further 40 % a partial recovery and
those with persistent illness may yet benefit from supportive therapies’ ([5] p979). Research indicates that
50 % of those with bulimia nervosa fully recover and the
outcomes with treatment for binge eating disorder obtain similar results [5].
However, Ben-Tovim et al.’s highly cited study on eating disorder outcomes in South Australia [6] concludes
that ‘many patients make a good recovery without accessing specialised treatments of any kind’, including treatments such as lengthy admissions for weight gain or
long-term outpatient care, pointing to the need to explore other contributing factors in people’s lives ([6]
p1257). The course of natural recovery may differ depending on the eating disorder, with one study finding
that 5-year prognosis for bulimia nervosa was poor,
while the majority of those people with binge eating disorder were recovered [7]. Other studies have found that
it is common for presentation for treatment to occur
many years after onset of an eating disorder, and into
late middle-age [5, 8, 9], highlighting that a large population of people with eating disorders are not engaged
with treatment. These findings point to the diversity of
recovery experiences, and to the importance of exploring
qualitative experiences of disordered eating and recovery
to understand what impedes and encourages recovery.
There are a growing number of qualitative studies on recovery from eating disorders [10–15] that focus on patient
perspectives. Such studies also identify obstacles to recovery. For example, qualitative studies show that the pursuit
of low weight addresses a sense of ineffectiveness, makes
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the person feel safe, helps communicate distress related to
possible rejection and abandonment, and moderates the
experience of negative emotions [11, 13, 16]. Bjork and
Ahlstrom argue that qualitative approaches allow for different dimensions to be explored that would risk being
lost in quantitative research. In their qualitative study of
patient’s experiences of recovery from chronic anorexia
nervosa, Dawson et al. note that the accounts of the
women they interviewed should be understood within
their gendered and cultural context [14]. While the
women ‘did not greatly examine the sociocultural context
from which their AN developed and recovery took place’
([14] p503), Dawson et al. suggest that such investigations
would deepen understandings of the cultural processes
that underpin eating disorders. Similarly, in her analysis of
gender and recovery in eating disorders, Moulding argues
that while qualitative studies draw attention to the cultural
dimensions of recovery, ‘there is [actually] little attention
to the social dimensions of these processes, with the focus
primarily on intrapsychic factors’ ([15] p71) located within
individuals.
The national framework on recovery acknowledges the
subjective experiences of recovery beyond medical and
psychiatric classification, with a focus on collaboration
between people with disordered eating, carers and health
professionals. However, the recovery model does not
currently engage with people's cultural perceptions and
experiences of eating and care, despite the aim of
recovery-oriented treatment being to encourage people
to seek professional health care and practice self-care.
The national framework includes sections on ‘understanding cultural idioms’ and ‘keeping diversity in mind’
which focus on people from culturally and linguistically
diverse backgrounds; Aboriginal and Torres Strait Islanders; refugees and asylum seekers; LGBTI people; and
other minority groups [1]. In the eating disorder therapeutic guidelines, an exploration of culture is limited to
the inclusion of the section Indigenous care, a dimensional and culturally informed approach to diagnosis
and treatment ([5] p983). Culture is not an external attribute or independent variable (such as one’s ethnicity),
but involves the myriad of taken-for-granted and embodied practices that give meaning to our everyday
worlds. Anthropologists have long pointed out that culture is practiced through ‘the shared … (implicit and explicit) values, ideas, concepts, and rules of behaviour
that allow a social group to function and perpetuate itself’ ([17] p345). All groups and societies (including researchers and health care professionals) have a number
of co-existing, overlapping and competing subcultures
[17]. Leading cultural psychiatrists (e.g., Kirmayer and
Minas 2002) and the recent Lancet Commission on culture
and health [18] support the view that culture is fundamental both to the causes and course of psychopathology and
Musolino et al. Journal of Eating Disorders (2016) 4:36
also to the effectiveness of systems of healing and health
care. Population health literature also suggests that social
factors, rather than medical interventions, are the main determinants of recovery from mental ill-health [19–21] (see
also [22] for concept of ‘recovery capital’).
Therefore, while the recovery-oriented framework for
treatment promotes inclusive service delivery, it lacks an
interrogation of the cultural contexts of recovery and
care. The main aim of this paper is to explore the cultural contexts in which a person experiences an eating
disorder and how this is critical to how they approach
recovery. Healthy eating and lifestyle discourses act as
ubiquitous cultural signposts for people wishing to
maintain eating disorder practices (‘watch what you eat’,
‘you are what you eat’) and often compete with medical
and psychiatric advice. Dutch anthropologist Annemarie
Mol has written widely about eating, bodies and care
practices in health care settings [23]. Her ‘logic of care’
is a useful framework to discuss how understandings of
care and recovery might differ between people with eating disorders and practitioners – and why people might
not seek therapeutic care in the initial phases of disordered eating or in the case of severe and enduring eating
disorders [24]. In the RANZCP 'Clinical Practice Guidelines for the Treatment of Eating Disorders', ‘meaningful
engagement in therapy’ is singled out as being ‘a crucial
component in all treatments for anorexia nervosa’ ([5]
p988). Expanding on what ‘meaningful engagement’
looks like in practice would be beneficial, and we argue
a framework of care may be valuable for thinking
through the different understandings of care held by patients and practitioners. Furthermore, the national
framework on recovery offers insights which could be
expanded to include a discussion on perspectives of care.
These include the framework urging health professionals
to be aware of ‘a person’s explanatory models of illness,
distress and wellness’ and ‘the impact of the practitioner’s own language, cultural beliefs and values on the
therapeutic relationship barriers to service’ ([1] p14). A
therapist’s capacity to understand how a person with disordered eating may perceive their practices as a form of
self-care and health [25, 26] is an example of recognising
an individual’s explanatory model and personal agency.
A recently commissioned report found that of the one
million Australians who suffer from an eating disorder,
less than 30 % engage with treatment [27]. Research to
date has mainly focused on people who engage with
treatment services [28], but we know very little about
the significant number of people who do not seek help,
or delay seeking help for many years. This paper thus offers new insights into why people might not even consider accessing recovery pathways, or take many years to
do so. The results reported in this study are part of a larger project that aimed to identify why people with eating
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disorders deny they have a problem, or delay and resist
professional care. In working with a group who are significantly under-researched, we aimed to demonstrate
how behaviours were rationalised as part of a cultural
milieu in which care of one’s self, demonstrated through
careful eating and physical exercise, was culturally legitimated and widely sanctioned. In attending to how
people understand their behaviours (as normal and ‘not
sick’), we hypothesized that this would illuminate important cultural contexts that underpin and potentially
obfuscate a need to attend to recovery.
Methods
Participants and recruitment
Data collection occurred over 15 months (January 2013
to March 2014) in Adelaide, South Australia and involved 28 women, ranging in age from 19 to 52. The criteria for recruitment included women who were over
16 years of age and had not seen a health professional
for disordered eating, had not been given an eating disorder diagnosis, or had been diagnosed but had delayed
seeking treatment or did not wish to pursue treatment.
Participants were recruited through snowball sampling
methods, with posters being placed around two metropolitan university campuses. The majority of posters
were placed on the backs of toilet doors and posed questions such as ‘Are you continually thinking about your
food and your weight?’ and ‘Do you enjoy the feeling of
not eating or excessive exercising?’. Privacy was crucial
to the locations of the recruitment information due to
the social stigma associated with eating disorders and
the nature of this study seeking participants who have
not previously disclosed their eating issues. This allowed
the potential participant to seek out information on the
study privately by emailing or phoning Author 1. As this
was a difficult sample to recruit, participants were also
recruited through mental health networks and advertising on social media websites such as Facebook groups
South Australian Body Esteem Activists and Supporting
Eating Disorders for South Australia. Most of the recruited women were under 30 years of age, university
students and of Anglo-Australian backgrounds.
Design
Through a mixed methods approach including ethnographic fieldwork and psychological evaluation, this
study focused on examining the cultural contexts of
women, food and disordered eating, with the aim of developing strategies for early intervention. The research
team was multidisciplinary, and included a social scientist, a medical anthropologist skilled in gender analysis,
and a psychiatrist and psychologist (both of whom specialised in eating disorders). In taking a multidisciplinary
approach, the authors attempted to re-examine the
Musolino et al. Journal of Eating Disorders (2016) 4:36
experience of eating disorders not from a clinical or tertiary point of view, but from a mixed method approach
framed by a sociocultural perspective. This approach led
to a questioning of taken-for-granted concepts such as
health, illness, eating and recovery, not only providing a
platform for exploring how these categories are culturally constituted, but also providing a framework for
questioning the categories that underpin therapeutic understandings of recovery and care.
Data collection
Data collection began with a pilot phase that included
three women who partook in at least 2 semi-structured
interviews, the Eating Disorder Examination (EDE) and
a diary writing phase. The pilot interviews gave Author
1 and 2 the chance to collaboratively reflect on the interview schedule and seek participants’ feedback, adapting
the study design where possible.
From the pilot phase the research team deduced that
the most appropriate order for conducting the interviews was to begin with a semi-structured interview in
the first meeting (allowing for rapport to be built with
the participant). In the second meeting the EDE was administered in order to ascertain if participants might fit
the diagnostic criteria of an eating disorder. The inclusion of the EDE was important to examine how participants responded to such evaluations, and provide them
with information for resources and services. EDE results
were sent to a researcher trained in the use of the EDE
(who analysed the data using SPSS and reported back to
the team). The third meeting began with a debriefing
session about the EDE, and then continued with the
semi-structured interview. The interviews were guided
by an interview schedule, which asked questions that explored what type of practices participants engaged in on
a daily basis (i.e. how they ate, exercised, engaged in activities); if they considered their activities ‘a problem’;
what cultural ‘norms’ helped to support their eating and
exercise activities; and if they had ever considered seeking help. Due to the exploratory nature of qualitative research, the interview schedule was flexible and follow-up
interviews with each participant provided opportunities
to explore their everyday lives in more detail. In total,
sixty-eight semi-structured interviews took place in
people's homes, in interview rooms at one of the universities, in cafes and in public places.1 In addition, recruitment for this study could be slow and some participants
were non-responsive. Four of the women who partook
in one or two interviews stopped responding to Author
1’s efforts to schedule more interviews. In attempting to
locate a population that does not identify as having ‘a
problem’, faces social stigma, and is reluctant to come
forward and engage with services, the recruitment and
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data collection processes highlight issues of accessibility
and privacy with such a hard to reach group.
Semi-structured interviews and observation are key
methods of data collection in ethnographic and qualitative approaches to research. Field notes taken during
and after interviews were critical to data collection as
they captured observations made during the research encounters, such as non-verbal cues, emotional reactions
performed through bodily dispositions, appearances, the
research setting, as well as reflexive notes on how the researcher may react to the participant’s narrative (which
adds to research rigor including research bias and how
the researcher may impact the research process) [29].
As disordered eating is associated with secrecy and
shame, participants were also given the opportunity to
engage in a diary writing phase for 8 weeks, in which
they wrote about the everyday moments, activities or
events that supported their disordered eating behaviours,
and their fears, pleasures and desires around food and
their body. Collecting diaries from participants also gave
Author 1 another opportunity to discuss the research
experience with the participant.
Analysis
Grounded theory principles guided the research
methods, coupled with thematic techniques of data collection and analysis [30, 31]. Grounded theory is a qualitative approach which prioritises deriving analytic
categories and themes directly from the data, not from
pre-conceived concepts or hypotheses [30]. All interviews (including semi-structured and EDE interviews)
were professionally transcribed, and field notes were
written up following each interview. To become closer
to the data Author 1 transcribed the pilot interviews and
open coded them within the same week afterwards. During the pilot phase of the study a list of codes were developed around certain themes, for example, ‘help
seeking’, ‘food’, ‘protection’, ‘ambivalence’, to then form the
basis of the thematic analysis of the interview and diary
data. Following the established coding process of open,
axial and selective coding, the interview manuscripts
and field note data was firstly open coded on the computer in a Word document, and then through the software programme NVivo by Author 1. Open coding
involved reading the transcripts and diaries line by line
to identify and develop any ideas, themes or issues from
the data [29]. In the collaborative meetings that followed
between Author 1 and 2, axial (or secondary) codes were
developed. This stage of data analysis involved making
comparisons across the data, so that the final stage of selective coding could occur. Selective coding involved
taking core themes and positioning these as key theoretical frameworks for analysis, and critically examining
their concordance (or not) with the wider literature.
Musolino et al. Journal of Eating Disorders (2016) 4:36
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Results
Disordered eating is perceived as ‘safe’
Participant descriptive
People’s experiences of disordered eating were often described as ‘safe’. Maintaining safe spaces, doing safe things
(like having the same plate to eat from day after day),
maintaining routines and eating ‘safe foods’ were common
themes. Forty five year old Morgan (who has experienced
30 years of eating disorders) said: ‘It’s safest not to have
too much variety: more variety seems to make you hungrier or something. It’s weird’. Another participant aged in
her 50s who had lived with eating disorders for 30 years
(and had enduring anorexia) described the safety and
comfort that her practices afforded her:
Of the 21 participants who consented to undertake
the EDE (N = 21), the mean global EDE score was
3.48 (SD = 1.06), with a range from 0.92 to 5.57. The
majority (90 %) met criteria for an eating disorder.
Most (81 %) fell into the Eating Disorders Not
Otherwise Specified (EDNOS) category, and 2 met
the diagnostic criteria of anorexia nervosa (See
Fig. 1). Of the total sample who participated in the
semi-structured interviews (25), six had a previous
eating disorder diagnosis (anorexia nervosa) from a
health care professional, and had had varying, but
limited contact with health providers, and no desire
to recover (in clinical terms). The other nineteen
participants had not previously sought professional
help and had never received a diagnosis.
As shown in Table 1, participants self-reported
when they believed their disordered eating begun
and for most participants, issues had begun in childhood and adolescence. While experiences differed
greatly, we report on two key findings (disordered
eating as producing safety, and culturally dominant
ideals of health) that are both understood as practices of care, thereby negating the need for therapeutic care.
Fig. 1 Participant diagnosis
the ritualistic side of it where you feel safe if you’re
sticking to your normal, you know, that’s why you do it
… you feel safe if you know what to expect if you stay
on this sort of a routine and a diet.
Twenty year old Lucy, who had developed disordered
eating at age 12 and never sought help (and whose EDE
revealed EDNOS), similarly described her experiences as
‘kind of safe’ – yet recognised the contradictory nature
of safety and suffering that she endures:
There is kind of two sides to it I guess, it’s like
comforting but it’s also exhausting at the same time.
Musolino et al. Journal of Eating Disorders (2016) 4:36
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Table 1 Self-reported length of disordered eating
ways in which people describe anorexia as a ‘safety net’
([32] p90), a ‘safe place’ ([32] p128), ‘the thing you believe is keeping you safe’ ([32] p186). Other anthropologists have similarly noted the ways in which people talk
about the protective spaces of anorexia, as ‘my little bubble’ ([16] p97); as something that guards me … from the
world, from people … something of my own that protects me’ ([33] Eli, forthcoming). Thus, as Lavis suggests,
the perceived safety of disordered eating ‘offers a way of
caring for the self that navigates tensions … [it] looks
after you’ ([26] p98).
Not reported Under 1 year 2 + years 5 + years 10 + years 20 + years
5
1
2
7
6
4
18 %
3.5 %
7%
25 %
21.5 %
14 %
Yeah. So what’s kind of comforting about it?
I guess just, I guess because if I don’t follow what I do,
I feel like really panicky and anxious and like a bit
depressed and stuff. But if I sort of stick to it, it just
makes me feel sort of more calm even if I am sort of
tired and everything.
Michelle (aged 27), who had swung between a diagnosis of anorexia and EDNOS for more than 10 years
stated that the only time she feels ‘okay’ about herself, is
when she is ‘sticking to [her] routines’. Her routines involve only eating safe foods (‘lettuce and stuff like that’)
in order to create safety:
it is very, very much a safe space and almost like a, I
guess being invincible almost, like nothing can touch
me while I’m here, like I’m managing to do this and
I’m managing to stick through it all. So yeah, “What
can really defeat me if I’m living on nothing?” if that
makes any sense at all…
This strong sense of safety (which was sometimes described as comfort, control or familiarity) was contrasted
with the fear of seeking treatment. Some said they were
‘petrified’ of seeing a psychiatrist, because ‘only crazy
people see psychiatrists’. Others said ‘I don’t think my
eating is a problem’ and ‘it’s not an illness … it’s only a
food thing’. Charlotte (who had travelled to the US for
treatment) explained that going into treatment was anxiety provoking as it was an exercise in ‘fattening up’,
where the primary focus was on weight gain as an indicator of wellness.
I refused to go somewhere where I would be monitored
at that level. I was over that, I found it humiliating, I
wasn’t going to go there and they do the whole you
know fatten you up, kick you out type thing.
Because her eating disorder was such a safe and familiar space for over 17 years, Charlotte was unsure if recovery was even possible: ‘I’m conflicted because I know
that you can recover to a point, you know after a long
journey … but then I also know or discovered that you
can be almost ED free for a number of years and think
it’s totally behind you, and then something happens and
it’s old and familiar’.
Clinicians and therapists will be familiar with this
characterisation of eating disorders as ‘safe spaces’.
Ethnographic work by Author 2 has also highlighted the
Recovering in a culture where an obsession with thinness
and dieting is the norm
The women in our study highlighted how cultural
understandings of healthy eating and exercise (the constant bombardment of cultural imagery that thin is healthy
and self-discipline is morally superior), made the impetus
towards recovery appear somewhat contradictory and
defeating. Women remain disproportionately diagnosed
with eating disorders, and cultural preferences for thin,
weight-managed female bodies are deeply embedded and
valued in most western cultures. This bodywork, as
Hardin [34] and others note, is highly gendered and informs everyday cultural practices around food and eating.
Charlotte explained during an interview: ‘I found at one
point when I was doing really well that I was recovered to
the point where I had a healthier relationship with food
and body than every other normal woman around me.
And that was really disturbing. And really challenging’.
She constantly struggled with all the information about
what foods one should and shouldn’t eat, and the imperative to take care of one’s self through the making the right,
healthy choices:
I kept going back to the pantry, trying to find
something that fit the criteria that would be okay to
eat. And I could discount everything in the pantry for
one reason or another, based on antioxidants, or fibre
or glycaemic index, or the level of refinement or
preservatives, or colourings or sugars or, you know?
There wasn't a single thing in that pantry that was
okay, if I put all of our society's messages and health
professionals’ advice together about what's okay and
what's healthy to eat.
Rochelle demonstrated the contradictions imbued in
being healthy and ‘normal’, revealing that recovery does
not occur in a vacuum but rather in a particular gendered and cultural context. She said:
There's so much health promotion but how much of its
healthy, it’s difficult to say. I once read that recovery
isn’t like going into a healthy lifestyle and being able
Musolino et al. Journal of Eating Disorders (2016) 4:36
to eat foods with fat, having that anxiety and things
like that and when you look at Michelle Bridges2 and
all those 12 week things, your whole day is still centred
around food and I’ve tried to do those kind of things
but it’s like I still get the anxiety.
Several scholars have noted the ways in which people
with eating disorders hide their practices within normative cultural ideals around food and bodies [25, 34]. This
might be through excuses about food allergies, special
diets or intolerances, and the pursuit of health enhancing activities and self-discipline (such as wearing Fitbits) that are culturally valued and understood to
demonstrate moral virtue. During an interview Sarah
joked how easy it was to continue her excessive exercise
routine in a 24-h gym where no one looked sideways at
her because ‘most of the people there are like high risk
for heart attacks, on steroids and things’. The acceptance
of constantly working on and pushing one’s body to
extremes was normalised and accepted as part of the
visible performance of bodily discipline and virtue.
In a time when fatness is stigmatised and associated
with ill health and deviance [35–37], LaMarre and Rice
suggest that ‘adding body size to the recovery equation
highlights difficulties with following prescriptions for recovery in a society that positions weight gain as wholly
negative’ ([38] p138). Participants in Malson et al.’s study
pointed to the ‘culturally constituted tension between,
on the one hand, treatment goals of reducing weight
concerns and, on the other, culturally normative idealisations of slenderness and the near-ubiquity outside of the
eating disorder ward of body image concerns’ ([39] p29).
Moreover, setting goals towards weight gain or target
weights, while obviously vital to survival and cognitive
functioning, are seen as antithetical to current cultural
discourses about weight reduction as taking care of one’s
health. As Tamara explained, ‘I think it can be even more
painful when you are weight restored but people don’t
understand that you’re still suffering’. These examples
demonstrate how it is important to understand recovery
in its cultural context, including how disordered eating
practices are intimately entangled in gendered practices
of care and healthy lifestyles.
Discussion
To maintain disordered eating, participants engaged in
high levels of self-discipline, and found pleasure in the
perceived safety that starving, bingeing and purging
afforded. Participants felt protected, and in doing so,
they took care of themselves by not having to care, not
having to feel. Unlike physical illnesses, disordered eating was described as serving a purpose: ‘Like if you
break your arm you know something is wrong whereas
when you have an eating disorder you’re doing it to
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escape from something else’. This escape was often a
distancing from gendered trauma, of sexual abuse and
violence. For Sarah, childhood abuse and neglect led to
‘playing with food’ as a way to ‘distract’ and ‘switch
everything off’. Starving, was thus positioned as a way to
keep her safe from ‘dangerous’ circumstances in which
‘someone might have an interest in you that is sort of
not what you want’.
Understanding people’s experiences of how disordered
eating is a form of care is key to why people may not
come forward to engage in professional care. A critical
exploration of the multiple meanings of care; the daily
practices of care giving and experiences of receiving
care, may provide insight into the tensions discussed
above. For participants in our study good care was often
talked about and formed a rationalisation for not seeking
therapeutic care [25]. Care was being on a strict raw
food vegan diet to prevent obesity. Care was bingeing on
junk food as a reward for weeks and months of extreme
restricting. Care was only consuming a liquid diet because solid food brought on a desire to binge. Care was
starving and shrinking the body to repel unwanted sexual attention. Eating disorders were practiced through
careful attention to changing bodies, surroundings,
tastes, textures, desires, hunger and relationships. For
the therapist, carer, family member and friend, Winace
argues that ‘to care is to be sensitive to the attachments
that support people, attachments which are sources of
both constraints and opportunities, which are openings
and closures’ ([40] p110). Being attentive to the way
people experience different modalities of care through
their disordered eating practices presents possibilities for
therapists to broaden their practices of good care and
nurture a therapeutic relationship.
If we take Lavis's contention that ‘caring is cyclical as
care of self necessarily instigates caring for [the eating
disorder] so that it may continue to ‘look after you’ ([26]
p104), we can begin to understand ‘the sense of being
cared for by the illness’ ([16] p71). In taking this
insightful premise, the disordered eating becomes not
just a problem of the individual patient, but part and
parcel of one’s social world. Thus wider cultural factors
are brought to bear, and can be used to broaden current
understandings of eating disorders beyond ‘egosyntonic
disorders’ ([41] p845).
It is critical for the development of a good therapeutic
relationship to broaden our understanding of obstacles
to recovery within the recipients of treatment, which
can portray the client as “‘hostile’, ‘oppositional’, ‘uncooperative’, and ‘impervious to treatment’” ([39] p26), to
an understanding of people’s experiences of self-care and
health. Boughtwood and Halse argue ‘tension between
patients and clinicians over treatment can undermine
the therapeutic relationship, which is the social contract
Musolino et al. Journal of Eating Disorders (2016) 4:36
between patient and clinician to communicate and collaborate on their shared goals and objectives for treatment’ ([42] p84). Furthermore, they point out that the
literature on the therapeutic relationship is written
largely from the perspective and goals of researchers and
clinicians with the aim of improving treatment and identifying variables affecting treatment outcomes [42]. The
voices and experiences of those living with disordered
eating in clinical and research settings therefore may
offer valuable insight into why from their perspective
the therapeutic relationship and treatment is failing.
Mol’s logic of care proposes that ‘patient choice’ and
‘good care’ often clash in health care environments, and
instead of pitting choice and care against each other,
Mol views care practices as attending to ‘the unpredictability’s of bodies with disease’, rather than a battle for
control ([24] p14). It could be said that it is the daily
practices of ‘good care’ that become important to strive
for in cases of severe and enduring eating disorders rather than expectations of medical recovery. This is
somewhat acknowledged in the proposal for a harm
minimisation approach which centres on improving
quality of life and reducing distress rather than focusing
on symptom reduction [14, 43].
In his keynote presentation to the Australian and New
Zealand Academy for Eating Disorders 2015 conference,
Ivan Eisler called for ‘a shift from control to caring’. He
discussed how within Family Based Therapy there needs
to be a focus on getting parents and carers to ‘care better’
instead of focusing on taking control of their children’s
eating. This highlights how often in eating disorder institutions good care has come to signify control of patients;
control of their bodies, consumption, spaces and routines.
Broughtwood and Halse argue such approaches define patients by their eating disorder behaviours and that it would
create greater understanding in the therapeutic relationship if instead clinicians attended to individuals’ ‘creative
negotiations of hospital practices’ and assisted patients ‘in
utilising their creativity to confront their illness in positive
ways’ ([42] p92). Therefore, it may be useful to approach
the actions of people with disordered eating through a
prism of care, rather than an escalation of control measures when patients present as ‘difficult’. This is consistent with recent research from inpatient settings in
Montreal which illustrate that autonomous motivation
was a significant predictor of change in severity of eating symptoms and attitudes such that patients with
higher pre-treatment levels of autonomous motivation
showed larger posttreatment reductions on these indices [44]. No such effects were associated with controlled motivation. It is also consistent with seminal
work of Touyz and colleagues, which showed that a lenient program for anorexia nervosa did not have poorer
results than a strict operant program [45].
Page 8 of 10
If the focus is on controlling the patient, the body or the
symptoms, greater emphasis will be placed on the failures
of the person or clinician involved. Hay et al. argue ‘because patients with anorexia nervosa are extremely ambivalent about therapy and have starvation related
cognitive deficits, current change-oriented treatments may
actually be counterproductive and give patients another
experience of failure rather than being helpful’ ([46]
p1142). Mol conceptualised the logic of care as a way to
practice and view care in a way that ‘does not impose
guilt, but calls for tenacity’ and ‘for a sticky combination
of adaptability and perseverance’ ([24] p91). Such an approach to care giving may be useful for those with severe
and enduring experiences of disordered eating.
Conclusion
This paper has explored how differing perspectives of
care hinder shared understandings of recovery. The
women in our study highlight how dominant models of
recovery take-for-granted and overlook the ways in
which the safe spaces of disordered eating and attention
to healthy lifestyle mantras are in themselves, a form of
care. These differences become a barrier to seeking
therapeutic care and recovery. In addition, the women’s
narratives demonstrate how recovery is tied to subjective
experiences and embedded in one’s cultural environment, not just treatment of medical and psychiatric
symptoms. It is important to acknowledge that for
people with disordered eating, their practices can be
seen through a lens of self-care, in which recovery thus
becomes positioned as unnecessary. Our work confirms
the findings of Lavis's UK study with women diagnosed
with anorexia, in which she found that ‘although selfstarvation may be clinically framed as an expression of a
lack of self-care, it emerges from informants’ narratives
as a modality of self-care that is simultaneously a response and precarious solution to pain’ ([16] p68).
Endnotes
1
At a later stage in the project we conducted a focus
group with a small number of women who considered
themselves to be in recovery. The purpose of this focus
group was to ask the women about strategies for early
intervention. We do not report on the focus group findings in this paper.
2
Michelle Bridges is a personal trainer on the Australian version of ‘The Biggest Loser’ and has various
weight loss products (including a 12 week body transformation program).
Acknowledgements
We thank the participants who generously shared their time with us, and
our research partners SA Health and Flinders Medical Centre. We would also
like to thank Sally Sinor and Sophie Allouache for early industry engagement,
Dr Anne O’Shea from the School of Psychology, Flinders University, and Kate
Musolino et al. Journal of Eating Disorders (2016) 4:36
Parsons and Loraine House from the Eating Disorder Association of South
Australia (EDASA) for their expertise and support.
Page 9 of 10
7.
8.
Funding
This study was funded by an Australian Research Council Linkage grant
(LP 110200179). Industry partners included SA Health (Mental Health Unit) and
the Weight Disorder Unit at Flinders Medical Centre.
Availability of data and material
The datasets during and/or analysed during the current study available from
the corresponding author on reasonable request.
Authors’ contributions
CM, MW, TW and PG contributed to the conception and design of the study.
CM recruited participants and collected the data with the support of MW.
CM analysed the data with support from MW. CM and MW drafted the
manuscript, TW and PG reviewed, edited and approved the manuscript for
submission. All authors read and approved the final manuscript.
Competing interests
The authors are responsible for writing this paper and its content. The
authors declare that they have no competing interests.
9.
10.
11.
12.
13.
14.
15.
16.
17.
Consent for publication
Included in the participant consent form was a statement concerning
anonymity and publication of participants’ data. Participants agreed to the
statement: ‘I have been informed that, while information gained during the
study may be published, I will not be identified and my personal results will
not be divulged’.
18.
19.
20.
Ethics approval and consent to participate
The study received approval from the University of Adelaide Human
Research Ethics Committee (H-2012-069) and the Southern Adelaide Clinical
Human Research Ethics Committee (SAC HREC EC00188). Prior to giving
consent, all participants were fully informed about the research and the
nature of their participation and understood they had the right to withdraw
from the study at any time. In agreeing to participate in the study,
participants were informed that information gained during the study may be
published, and that they will be de-identified in all sources. Participants were
provided with a copy of their signed consent form, along with information
and resources on available eating disorder services in the initial meeting.
Author details
1
Gender Studies & Social Analysis, School of Social Sciences, Faculty of Arts,
University of Adelaide, Napier Building, Adelaide, South Australia 5005,
Australia. 2School of Psychology, Flinders University, Adelaide, South
Australia, Australia. 3Psychiatrist in private practice, Adelaide, South Australia,
Australia.
21.
22.
23.
24.
25.
26.
27.
Received: 31 March 2016 Accepted: 4 August 2016
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